Learn About the Upcoming
2012 Histiocytosis Awareness Event
Liam's Lighthouse Foundation's 3rd annual Histio Rare Disease Day awareness event was a HUGE success!! We were seen on The Today Show both Fri, Feb 24,2012, and Sat, Feb 25, 2012! Dr. Filipovich achieved a brief interview, our website was mentioned on air, and Ann Curry said the word Histiocytosis!! I am still flying high from this event! I feel so elated and hopeful for what the future is going to bring for awareness and a cure!! We all met at The Today Show on Friday morning, then some of us attended a taping of the Dr. Oz show live, hoping to get to spread the word about Histio but no such luck. It was so very cool nontheless! We all met for a meet and greet and dinner Friday evening at The View Lounge in the Marriott Marquis. This restaurant rotates 360 degrees and is all windows so you have a 360 view of the entire city! It was absolutely amazing not to mention the food was phenomenal!
It was such a pleasure having both Dr. Ken McClain and Dr. Lisa Filipovich there with us and they seemed thrilled to be there as well! We all met Saturday morning again outside The Today Show for a second go around to increase Histio awareness. We ended up having much more coverage this day and guess who just happened to be there too? Dr. Oz!! He came out and we were able to give him a flyer on Histio and ask him a few questions. We were desperately trying to get him to do a show on Histio and he did acknowledge that he remembers receiving tons of emails about Histio and LLF in the past. He was there. He saw our name. He saw the words Histiocytosis. He heard Dr. Filipovich speak! Success!! Keeping our fingers crossed we get contacted by his people! After that, we met in Times Square on the red bleachers where we conducted our iPAD 2 drawing and took many priceless photo as you will see!
The winner of the iPAD 2 was Judy McNeish a histio mom! How cool is that! Here are some video clips if you missed us and a special video I created to remember those angels who left this earth way too soon and why we travel all the way to NYC for awareness! We will continue to fight for those still fighting and for those whom are no longer able to fight.Thank you all for joining us and to those who helped us prepare for the campaign! It couldn’t have happened without you.
SPECIAL THANKS to Rochelle Wilkinson for the AMAZING job she has done organizing this event and for her continued dedication to our cause. I can't thank you and your family enough. I know you stopped your life for a little while to make this happen and while I hate that, I'm forever grateful for it's because of you America has heard the words Histiocytosis! I love you and I know Liam feels the same way!
Also, special thanks to Lelynn and Shawn Parys, Michael Golding, Lori Negron, Lee Lamarche, Kelly and Hannah Marsh, Shannon Yates, Jackie Hodge, Dr. Ken McClain, and Dr. Lisa Filipovich! Special thanks to all the parents who couldn’t be there but were there with us in spirit and for allowing us to include their child’s photo in the campaign. Special thanks to all the volunteers and who came out to support these families and hold a child’s photo. Special thanks to all the histio parents who came out to honor their child by holding their photo. I realize these families and volunteers stopped what they were doing, took off work, left their child/children, and traveled from all over the world on their own dime to make a difference so thank you all so much! I have made new, amazing friendships and connections with all these special people and for that I am very grateful! I am super excited for next year!!
2011 awareness campaign